"It's Alive" (1973-1974)
- Moving on to Part 3 ("Immortality").
- In 1973, Bobbette met a man who worked at the National Cancer Institute. When he learned that her last name was Lacks, he that he worked with cells from a woman named Henrietta Lacks.
- Bobbette thought this was strange: Henrietta Lacks was her mother-in-law, but she'd already been dead 20 years.
- It soon became clear to Bobbette that they were talking about the same woman. Bobbette was royally freaked out to learn that Henrietta's cells were in this man's lab. The family didn't know.
- Even worse, Bobbette learned from him that everyone and his uncle had been ordering vials of her cells for scientific experiments.
- She'd read about the experiments at the Tuskegee Institute, and now it seemed that pieces of her dead mother-in-law were being used without consent as well.
- Bobbette worried that the doctors would come after the rest of Henrietta's family, too.
- She told her husband Lawrence that part of his mother was still alive somewhere.
- When Lawrence told this to Day, all he heard was that Henrietta was alive somewhere.
- Lawrence called the main switchboard at Hopkins to find out what they were doing to his mother, but they clearly had no idea what he was talking about.
- Around the same time, researchers who were trying to map the human genome wanted to untangle the HeLa contamination problem.
- They figured the best way to do this was to get some blood from Henrietta's living relatives so that they could properly identify HeLa in cultures by mapping her genes.
- Talk about bad timing…
- Victor McKusick, a Hopkins geneticist, volunteered to get blood from the Lacks family. Or rather, he volunteered his barely English-speaking postdoctoral fellow, Susan Hsu.
- Hsu called Day and asked to draw blood. She wasn't told to explain anything to them.
- Day later tells Skloot that Hsu explained that the blood was for a "cancer test" to see if the children had cancer like their mother.
- But apparently Hsu said no such thing (there is no "cancer test"). There was, however, a whole lotta miscommunication because of clashing versions of English.
- Hsu seemed to think that the Lackses understood all about Henrietta's cells and how they were used. Day allowed her to draw the blood.
- And what about informed consent? Day didn't seem to understand what was truly going on, and Hsu never had him sign any forms because it was just a blood draw.
- Skloot explains that the best way to provide oversight in scientific research had not been decided yet.
- The NIH had put some guidelines in place, but in the wake of the Tuskegee Institute experiments, regulations about retrieving and using human tissue for research were still being debated.
- Deborah really thought that Hsu was taking blood to find out if she had the same cancer that killed her mother.
- She even called the operator at Hopkins to find out about her "cancer test results," but no one had any clue.
- And she was plagued by the thought that doctors at Hopkins still had some of her mother alive there and were doing terrible experiments on her.
- After reading about Chester Southam's unethical injections of cancer cells into patients without their consent, Deborah also believed that she and her sibs had been injected with their mother's cancer cells.
- Then McKusick's office called Deborah in to give more blood—because another researcher wanted some—and she still thought they were looking for cancer.
- But that was four days before a new federal law about informed consent went into effect, so Deborah never fully learned what the docs were doing with her blood.
- When she met McKusick, she had tons of questions for him. But McKusick assumed she knew all about her mother's "contribution" to science.
- Totally clueless as to Deborah's lack of knowledge, McKusick frightened her with a general summary of the experiments that were done with HeLa cells.
- He gave her signed copy of a genetics textbook—probably something used for med school students or professionals—thinking that would help answer Deborah's questions.
- She couldn't understand the language of the book, but she saw the now famous picture of her mother in the textbook. Deborah had no idea why the picture was there.
- Skloot tells us that McKusick never remembered meeting Deborah and didn't know where he'd gotten the picture of Henrietta to include in the textbook.
- She says that Hsu never understood the Lacks' situation. She wanted Skloot to tell the family how grateful she was for Henrietta's contribution; and would they give her some more blood, please?